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Week 1 There are two purposes of this log: 1. To provide an update for our family and friends. This helps us not to have to repeat the same story over and over. It's a difficult story to tell. You can check this page and see if there has been any new posts. 2. To give an outlet for Jenny. Writing is very therapeutic to me. For those that know me well, I'm a talker. I am the kind of person that has to express my emotions and feelings. This is a way for me to get my thoughts out. I appreciate your reading. Thurs. May 6th 12:25 pm--I was informed by my mother in law that today is National Prayer Day as declared by President Bush. That's good because my little girl needs a lot of prayers. We have had a rough morning. Upon arriving at the hospital, we noticed some immediate changes in the baby. She had a tube into her nose and her swelling was much more pronounced. Dr. Lenarsky came to speak with us at about 9. During the night, Allie received more chemotherapy. Her blood count was very low, so she had to have another blood transfusion of red blood cells and platelets. Due to the amounts of fluids being pumped into her, her swelling is at a very scary level. Dr. Lenarsky said it was imperative to get the swelling down. This swelling, especially in her belly, can cause more damage if isn't dealt with. It can affect her breathing by pushing into her lungs and not giving them enough room to breath, as well as a number of other things. He gave her a drug called lasix (not sure if I spelled that right. It sounds like the plural form of the eye surgery). Essentially, this is designed to help her pee. By peeing, she is secreting the excess fluid that is in her. I am sitting here in her hospital room right now (with my surgical mask over my face, of course) waiting for her to have a catheter inserted into her. They are wanting to monitor exactly how much is coming out of her body. They are also going to put her on a continuous drip of the lasix medicine. Today is a critical day. We aren't thinking past this afternoon. Dr. Lenarsky did give us some good news that the chemo is doing its job properly. Her white blood cells count has gone down considerably. It is now at 6,000. One thing he said is that if he didn't see any change, that would have been very bad. It is a small success, but it is one we will take. The lasix medicine also seems to be doing its job by getting her to pee. The only problem is that while he can control what is coming into her body, he cannot control how her body is reacting to it on the insides. We don't want her to lose too much liquid either. I was just speaking to our nurse Susan. We have had four truly incredible nurses with us in PICU so far-Susan, Sherri, Robin (oncology nurse) and Angie. These women have some Allison love and have cared for her like they would want their children to be cared for. The hardest part of this whole thing is the way it happened. Up until now, we have had the perfect baby. Of course, we still do, but now we have a very sick baby. I know how she normally is. I know the smiles, giggles for Daddy, playfulness of this baby. Looking at her this morning, I began bawling. She doesn't even look like the same child. I posted two pictures in her room-one above her head (the one of her smiling in her exersaucer towards the end of page 4) and one next to her art project Joey made for her (her looking straight into the camera with those big beautiful eyes). This is to serve as a reminder to us and the nurses about the beauty of this little girl. To help remember what she was like before illness. This is a shock. AML is a very rare disease in such a young age. I knew something was not right with Allison, but never in my wildest dreams and nightmares did I ever imagine this. Susan was telling me that she has been working in this hospital for 16 years. Allie is maybe the third baby that she has ever seen with AML at this young of an age. We are very lucky that we had the intuition that something was wrong and decided to call Dr. Katz on Monday. It was simply by a fluke that Dr. McDonald and Dr. Katz had decided to run a white blood cell count with her blood test. They were actually suspecting meningitis. I have to believe that God knows what he is doing with Allison. Prayer is the only thing that calms me down when I go into my panic freak out state. I have that happen at least several times a day. We joke that we have every religion from all denominations of Christianity to Judaism, Muslim and Hindu praying for her. We laugh that surely with all those prayers, God is up there thinking "Enough already, I heard you!" Keep'em coming though, keep those prayers going as much as you can. We need every thought and prayer possible. Right now, the prayer is to let the swelling go down and to keep the chemo from causing too many serious reactions in her body. We are of course praying for total remission, but honestly, we can't even think that far ahead. We need her to stabilize, have a good reaction to this round of chemo, and continue to have good function of her heart, liver, and lungs. We need her to fight to live until tomorrow. She will receive more chemo today at 2 and then again at 9 tonight. I am going to go now to get a snack and visit with our family. After writing all this, I need a few hugs. I love you all. Thank you so much for your love for Andrew, me, and especially baby Allie.
Thurs. May 6th 11:34 pm--I can't believe how many people have visited our website! Andrew and I are at the hotel right now. I have been online looking at our guest book. Unfortunately, I know that some posts were lost during an update this afternoon. If your post isn't there, please post again. Thank you all for your thoughts and prayers. We are trusting God is listening. I have been a member of the Dec 2003 birth club on Babycenter.com since finding out about my pregnancy. Sometimes, I simply read others' comments and sometimes I posted during the pregnancy. After giving birth, I became a very active member. Andrew always rolled his eyes when he saw me on, but now I know why God led me there. These ladies are incredible. Summer in Washington (sorry, Summer, I don't know your last name, but you have become my new guardian angel. I will meet you one day!) has created a fantastic website for Allie and for people to give donations. There is a link on the main page for this site. I cried when I opened it today. She did a beautiful job creating a montage of pictures of my baby. Funny that they were all my favorite pictures. What a beautiful and photogenic baby I have! We left tonight feeling a little better about her progress. They checked her potassium and sodium levels to see how they were. They were excellent, especially her sodium. This means that her kidneys are functioning properly. With all the trauma going on to her organs, they are all holding up well so far. That isn't to say that they won't have trouble tomorrow. With AML and chemotherapy, I am learning some things are like a roulette wheel. You don't know what it will land on until it does. Allie loves her hands and to hold on to things. Nurses in the hospital at birth commented on her strong grip. I meant to take a picture of it today, but didn't get a chance. She holds on to either her direct line wires in her chest or to the bed rail at all times. Even in her sleep. It is so adorable! She will only face to her left side. Susan, her nurse, explained to me that it is due to her liver. Her liver is on her right side. Due to the swollenness of her liver, she struggles with sleeping on her right. It puts too much pressure on her. The lasix was very successful! She peed like crazy today. I've never been so excited over pee in my life. She will continue to be on it for several more days probably, but hopefully we will start seeing results with the swelling soon. Tomorrow is a new day. The next few day are critical. If I understand it correctly, it is called tumorizing. The goal of the chemo is to kill the leukemia cells. They will actually burst. After bursting, their fluid and toxins will actually have to be released into the body. This is going to make Allie very sick. She will most likely look pretty bad in the next few days. I am scared to see what we will walk into tomorrow. When we left tonight, her color, vital signs, and important stats looked good. We don't know what to expect tomorrow. I guess we will see.....I post more then. Love you all! --Jenny
Friday, May 7th My mom's birthday! 3:00pm--Allison decided to give her grandma a birthday present this morning. We walked in and saw a glimpse of the baby we really know. Her rash is improving. W It is still everywhere, but it is lessening day by day. Her swelling went down considerably. Now, her chunk is actually more from being a chubby baby than from having too much fluid! Her white blood cells have gone down to 4,000. This was a positive. Drew, Andrew's father, made it in to town yesterday. His sister, Amie, is coming tonight from Utah to be here with us. Dr. Lenarsky met Drew this morning. He gave us an update of how he thought she was doing. It said it didn't take a doctor to see that she at least looks better than yesterday. However, that doesn't mean she won't take a turn for the worse in an hour. We are still living minute by minute. Her oxygen tubes in her nose have been taken to a decreased level. She was taken off of blood pressure medicine. Her heart rate dropped a bit this afternoon and so did her temperature. It was down to 96.2. My mom just checked it, and it is now at 97.9, so we are headed in the right direction. Funny--four days ago, we were worried that her temperature was too high. Now, we were worried because it was too low! We just can't win! She is receiving all three chemo medicines today. Ara-C is the first one. It takes only 15 minutes. The next one, a red one that I can't remember the name of, takes six hours to infuse into her body. Finally, she has VP-16 this evening, and that will run for four hours. The Ara-C is the one that lasts ten days, red is only Day 1,3, and 5, and the VP-16 is for five days. The purpose of this round of chemo is to kill as much of the leukemia as possible. I have been reading my new book, You and Leukemia, that has been very informative. Here is what I understand about the blood system (remember, Leukemia is a cancer in the blood system): *Bone marrow is the "factory." All the stem cells are created in the marrow. Blood is all made in the bone marrow. *Red blood cells carry the hemoglobins in the body. It carries the oxygen. This is actually the only part of blood that is red. Without red blood cells, blood is actually like the color of light urine. A neat explanation in the book is the example of tomato juice. If you pour , tomato juice into a glass (a science experiment!) and place it into the fridge for a few days, you will notice a change. It will be reddest at the bottom and a more clear, golden color on top. This is because it is a combination of tomatoes and golden juice. It is only when it is well mixed up that it is truly all red. The same with blood. *White blood cells are the "soldiers." They work to fight off infection. During chemotherapy, white blood cells are destroyed. We will actually wipe away all the white blood cells in her system. At that point, she will be very susceptible to infection, even from the bacterias already in her own body. When her white blood count is very low, we have to protect her from any possible exposure. That is one of the reasons I am still wearing a face mask. My cold could develop into pneumonia in her tiny body. *Platelets are what makes the blood clot. When you cut yourself, you may bleed for a little while. The platelets make the bleeding clot and stop. Without platelets, you also bruise easily and more pronounced. *Blood transfusions are only done for the red blood cells and platelets. They said that the white cell transfusions have been found to be ineffective and not practiced often. There are two kind of acute leukemia. Acute means that it affects the body quickly. Of course, our girl had to get the worse kind. AML is very severe and very serious. It is more common in teenagers and people in the twenties. Treatment is always done in the hospital. After Allie finishes her ten days of chemo (seven more days to go), so has a few weeks in between the next round. However, she will NOT be allowed to come home at that time. She will have to remain in the hospital for that time and even after the next round of chemo. I expect that we will be in the hospital (and of course that also means the hotel) for most of the summer. I don't know how we will get that all paid for, but I can't even think about it right now. I know that I can't go home. I can't walk into my home right now. Brandy is with my brother, Jeremy, at our house. I miss her terribly. I'm sure she knows that something is wrong. She has to--I believe dogs sense these things. I want to try to see her sometime, but I know it can't be at the house. I am avoiding major breakdowns right now. The family therapist, Dr. Elizabeth, said we need to try to avoid those major breakdowns and lows as best as we can (easier said than done sometimes) because it takes too much energy for us to get back to where we need to be. One final thing before I hand over the computer for Andrew to post. I wanted to share this story: When we arrived at the hospital this morning, a man was waiting for us in front of PICU. His name was Aaron, a fire fighter for Garland and employee for Texas Oncology (with Dr. Lenarsky's group). He said he wanted to tell us that he had heard about Allie several times this week. He overhead Dr. Lenarsky telling on Tues. about his newest patient, a four and a half month old with AML. Dr. Lenarsky was sharing with Robin, our oncology nurse, about our story because she was going to begin chemo with us on Wed. When Aaron got home, his wife told him that a friend of his, Linda Brown, had called. Linda is the CFO of Reunion Title, Andrew's company. She relayed the story to Aaron's wife about an employer at Reunion whose daughter was diagnosed with Leukemia. Sure enough, it was the same baby. They live in Allen, and attend First Baptist Church of Allen. While his wife was visiting someone this week, she told him about Allie. This man from her church told her that, amazingly enough, through someone else he knew, he had already heard this story. The final connection that Aaron had to us was that his daughter plays on a soccer team with a daughter of a teacher, Tom Hansen, that teaches three doors down from me at Rice! Talking to Aaron really helped me this morning. I sure hope that I get to see him again. He brought me comfort because he showed me just how many people are truly caring about us right now. Even total strangers. He helped start our day off right. I just know that God sent him to us right when we needed him. OK, Andrew is ready to post this. Love you all.
Saturday, May 8th 5:30pm--Guess what I am getting to do right now? Lay in the bed, snuggling my baby! Allie was moved out of the PICU this morning and up to the 12th floor, bone marrow transplant unit. This area is more conducive to families (we have a couch and a bed in here) and they see leukemia patients much more frequently. Being this close to her, holding her and gently stroking her belly has been one of the best moments of this week. She is still here with me on the bed next to her crib. I just can't bring myself to give her up yet. She is peaceful with me, so she is going to stay that way for as long as she can. Allison is really hanging on. She is an amazing little girl. Her white blood count is down to 1,800. We are about to reach a stage called nutrapenic. This means that her white blood count is less than 1,000. This is when she is most susceptible to disease and infection. We have to be super careful. the room that she is in also helps filter out stuff in the air. The patient next door to us is named Sam. Sam is three and a half and also has AML. His mom, Dana, told me today that he too goes to the same pediatrician's office. With this rare of a disease, how crazy it is to have two patients, diagnosed within a month of each other, both with AML. Of course, Allie is the youngest. I asked Kelly, her new nurse today, if she had ever seen another baby this young with Allie's leukemia. Nope. She said that she didn't know for sure, but she wouldn't be surprised if my Allison is the youngest child with AML currently going through treatment. If there is another that young out there, I would love to know. This afternoon, mom and I attended a "Prayer Rally for Allie," organized by some of the members of my church. It was wonderful to get out of the hospital and see people, as well as to prayer for the baby. We spent time with me giving them updates, then we prayed for quite a while. You could just feel God's presence in the room. I sincerely hope he hears my prayers. Allie's Angels is taking donations through PayPal and doing auctions in Allie's name on Ebay. We have had so many generous people help us out. Andrew and I are the kind of people that do not ever want to ask for money. Our thought is that if we can't pay for it ourselves, we don't need or want it. However, in times like this, I can't be humble. We do need money for things such as medical bills, hotel bills, prescriptions, etc. My worries about finances are really beginning to build up. Don't know how we are going to manage. Summer Morris is in the woman who set up Allie's Angels. She has blessed us so much with her help and generosity. Thank you for calling tonight, Summer! I never thought someone so far away could be so helpful and loving to a complete stranger. Allie is off blood pressure medicine, off oxygen, and finally taking bottles again. She is now allowed 3-4 oz every 3-4 hours. That is still less than what see took before getting sick, but it is a big step. She has not had vomiting yet, but I won't be surprised. She takes Zofran, an anti-nausea medicine, about half an hour before chemotherapy begins, as well a steroid medicine. So far, what we have going for us is that her kidneys, liver, lungs and heart are functioning well. We are holding on to that. It is very possible that due to the amount of stress being put on her organs, one of these will have some problems later on. Right now, we are so thankful of how she is progressing. Unfortunately, that isn't to say that she won't have an extremely bad day tomorrow. She was battling with spiking temperatures today and an increased heart rate. They are just trying to closely monitor that. She seemed to have her fever break. I am still concerned about her "Budha Belly." She is still getting lasix, but her stomach is still elarged (see the picture). My uncle Mike came into town last night. Mike is eleven months younger than my father. It is really good to have him here, but hard at the same time. He looks and sounds so much like my dad (though they are different in personality). It reminds me how much I miss my father, but at the same time, it brings me peace that a part of my father is here with me during this time. Seeing Amie, Andrew's sister, last night was wonderful. I have clung to her today. Seeing her has meant a lot to me and Andrew both. She came and lied down with Allie and me on the bed. We talked and loved on the baby for almost an hour.
Sunday, May 9th--Mother's Day 9:05 pm--Well, this is certainly not the first mother's day I had imagined, but any day with Allie is a good day, so I will take it. I remember last mother's day very clearly. I had not been feeling well for a few days. The day before, I had actually passed out in the shower. When telling my friend Angela, who is now Allie's babysitter, what was going on she commented that I thought I was pregnant. I actually laughed at her because I didn't think I was. For Mother's Day, Andrew and I were planning on having my mom, her boyfriend Bill (Allie's "Paw Paw"), and my brother Jeremy for dinner. We went to the store to pick up a few last minute items. While walking through the store, I shared with Andrew what Angela had said. He suggested we buy an at-home pregnancy test just to see. Sure enough, on Mother's Day, I discovered that I was pregnant with our first child! Since my mom was coming to dinner that night, I knew I had to tell her. So, Andrew and I actually put the pregnancy test (cap on, of course :) ) in a bracelet box and gave it to her as her gift. And what a gift our Allison is! Today was a great Mother's Day (I'm putting things in perspective). I got the biggest present I could ask for, the presence and joy of my baby for another day. That is always a gift. Her white blood cells have continued to go done. She is now at 1,200. Of that, only 2% of the white cells were "blasts," or leukemia cells! That is amazing. The chemotherapy is really working! Our Allie is a strong fighter. She is not about to give up. Not her time yet. She looks pretty good today. They reduced the amount of lasix she is receiving, removed her foley catheter, and did not have to give her any transfusions. She sat up with Andrew and Aunt Amie for a long time laughing and smiling while I visited with company in the waiting room. We discovered what will make her smile--watching her cousin Isabella, Amie's two year old daughter, sing songs on a video cassette that they made for Andrew's mom. Allie loves it! We played it twice today. Sam next door is going home tomorrow for a week. He will still need to go for blood checks. Sam's mom, Dana, offered a piece of chocolate raspberry cake that her friend had brought for her. When I opened the box with the nurses, the cake said, "Happy Mother's Day." I didn't think that statement would bring me to tears, but did they ever start flowing! We were supposed to participate in the parent/baby dedication this morning at church. Instead, they did a special ceremony for Allie after they did the baby dedication for the other babies born within the last year. Pastor Bob spoke about Allie then they did a slide show of her pictures. From what I heard (obvious reasons I was not there), it was beautiful. Several of our family members, including both our moms, attended the service. I know it must have been very difficult for them. The hardest part of watching her is knowing how much pain she is in. Changing her diaper brings screams of pain. Her whole body just hurts. I hate to move her unless I really have to. Hard to believe that last Sunday, she and Andrew were playing airplane around the house with Brandy nipping at Andrew's heals. She never liked it when we played airplane with the baby--made her nervous. I really miss Brandy. That is our first baby. Luckily, she is at home with Jeremy, who is taking excellent care of her. He waited to come to the hospital this morning until after he had played really hard with Brandy and worn her out. My mom watched the baby last night while I went to dinner at Red Lobster with Jeremy, Uncle Mike, and Andrew. I felt sorry for our waitress. Right as she asked for my drink order, I burst into tears. I was feeling so guilty about being gone from her and leaving her in the hospital. I know I have to do it to keep me well too, but it was still hard. I hate seeing her suffer and be in pain. I have had several people ask me about if they will do a bone marrow transplant. Dr. Lenarsky said she really isn't a good candidate for that since they prefer to get bone marrow from siblings, the best matches. What they will actually do for her is a cord blood, or stem cell, transplant. This is where they use the blood from an umbilical cord. We did not save her umbilical cord in a bank, but he said he wouldn't use her's anyway. They still have to find a match for her, but there are now blood banks all other the world. The nurses really like it when they have to pick up cord blood in another country because they get to get on a plane, go to another country for a day, and then return. They get all excited. Since she did have a good day, we couldn't resist taking pictures. Let's pray for another day like today:
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